Differences in Parent-Provider Concordance Regarding Prognosis and Goals of Care Among Children With Advanced Cancer

1. Abby R. Rosenberg,
2. Liliana Orellana,
3. Tammy I. Kang,
4. J. Russell Geyer,
5. Chris Feudtner,
6. Veronica Dussel and
7. Joanne Wolfe⇑

© 2014 by American Society of Clinical Oncology+

1. Abby R. Rosenberg and J. Russell Geyer, Seattle Children's Hospital, Fred Hutchinson Cancer Research Center, and University of Washington; Abby R. Rosenberg, Treuman Katz Center for Pediatric Bioethics, Seattle, WA; Liliana Orellana and Veronica Dussel, National Institute of Cancer; Veronica Dussel, Institute for Clinical Effectiveness and Health Policy, Buenos Aires, Argentina; Tammy I. Kang and Chris Feudtner, Children's Hospital of Philadelphia, Philadelphia, PA; and Joanne Wolfe, Dana-Farber Cancer Institute and Boston Children's Hospital, Boston, MA.

1. Corresponding author: Joanne Wolfe, MD, MPH, Center for Outcomes and Policy Research, Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, 450 Brookline Ave, Boston, MA 02215; e-mail: joanne_wolfe@dfci.harvard.edu.

Abstract

Purpose Concordance between parents of children with advanced cancer and health care providers has not been described. We aimed to describe parent-provider concordance regarding prognosis and goals of care, including differences by cancer type.

Patients and Methods A total of 104 pediatric patients with recurrent or refractory cancer were enrolled at three large children's hospitals. On enrollment, their parents and providers were invited to complete a survey assessing perceived prognosis and goals of care. Patients' survival status was retrospectively abstracted from medical records. Concordance was assessed via discrepancies in perceived prognosis, κ statistics, and McNemar's test. Distribution of categorical variables and survival rates across cancer type were compared with Fisher's exact and log-rank tests, respectively.

Results Data were available from 77 dyads (74% of enrolled). Parent-provider agreement regarding prognosis and goals of care was poor (κ, 0.12 to 0.30). Parents were more likely to report cure was likely (P < .001). The frequency of perceived likelihood of cure and the goal of cure varied by cancer type for both parents and providers (P < .001 to .004). Relatively optimistic responses were more common among parents and providers of patients with hematologic malignancies, although there were no differences in survival.

Conclusion Parent-provider concordance regarding prognosis and goals in advanced pediatric cancer is generally poor. Perceptions of prognosis and goals of care vary by cancer type. Understanding these differences may inform parent-provider communication and decision making.